Robert Califf, the head of the Food and Drug Administration, doesn’t seem to be having any fun at work.
“I would describe this year as hand-to-hand combat. Really, every day,” he said at an academic conference at Stanford in April. It’s a sentiment the FDA commissioner has often expressed.
What has the Califf goat been getting to? Misinformation, which is partly to blame for the stagnation of American life expectancy. For Califf, the country that invents many of the most advanced drugs and devices is lousy at using those technologies well. And one of the reasons for that is the misinformed choices of Americans, he suggested. Many are not using statins, vaccines or covid-19 therapies. Many choose to smoke cigarettes and eat the wrong food.
Califf and the FDA are fighting misinformation. “The disinformation machine is really causing a lot of deaths,” she said, in apparent improvisation, this spring in a speech at Tufts University. The pandemic, he told KFF Health News, helped “crystallize” his need to address misinformation. It was a “flagrant case”, in which multiple studies provided evidence of very effective therapeutics against covid. “And a lot of people chose not to.” There were “large-scale purveyors of misinformation,” she said, poisoning the well.
From time to time, however, Califf and the FDA have added to the cacophony of misinformation. And sometimes their misinformation is about misinformation.
Califf has been unable to consistently estimate the public health cost of misinformation. Last June, he said it was the “leading cause of significant years of life lost.” In the fall, he told a conference: “I have been saying that misinformation is the most common cause of death in the United States.” He continued: “There’s no way to prove that, but I think it is.”
On other occasions, such as in April, he has called the problem the “main cause” of premature death in the country. “I’ll keep working on this to try to get it right,” she said. Later in May, she said, “Many Americans die or experience serious illness each year because of poor decisions driven by false or misleading information.”
In fact, the health of the American people is in dire straits. The Centers for Disease Control and Prevention noted that the country’s life expectancy has dropped two years in a row: It’s at 76.1 years as of 2021, a dismal end to four decades of lagging gains. Countries like Slovenia, Greece and Costa Rica outnumber the US. Their newborn citizens are expected to live past 80 years, according to the Organization for Economic Cooperation and Development.
Several factors are at the root of these differences. But American choices, often informed by bad or misleading data, political jeremiad, or for-profit advertising, are among the causes. For example, a 2023 article estimated that a lack of covid vaccination, caused in part by misinformation, costs up to $300 million a day, accounting for both health care costs and economic costs such as lack of work.
Outside experts are sympathetic. Misinformation is a “big public health problem,” said Joshua Sharfstein, a professor of public health at Johns Hopkins University and a former principal deputy commissioner of the FDA. Having a strategy to combat it is crucial. But, he warned, “that’s the easiest part of this.”
The agency, which regulates products on which consumers spend 20 cents of every dollar per year, is putting more force behind the effort. It has begun to bring up the issue of misinformation in its takeover requests, such as a discussion of the need to monitor social media for cannabis-related misinformation.
The agency launched a “Rumour Control” page that seeks to debunk the lingering confusion. He also expects to receive a report from the Reagan-Udall Foundation, a nonprofit organization created by Congress to advise the FDA. Califf has said that he believes that better regulation, and more authority for the agency, would help.
Califf has noted small victories. Ivermectin, once touted as a covid wonder drug, “eventually” became one of those wins. But then again, its use “hasn’t completely disappeared,” he said. And, despite winning individual battles, his optimism is muted: “I would say that right now the trend in the war is going in a negative direction.”
Some of those battles have been quite small, even marginal.
And it’s hard to know what to deal with or what to respond to, Califf said. “I think we’re in the early days of being able to do that,” he told KFF Health News. “It is very difficult to be a scientist,” he said.
Take for example the agency’s experience last fall with “NyQuil chicken,” a supposedly viral food trend in which users roast their birds on the over-the-counter cold medicine on social media platforms like TikTok.
Califf said his agency’s “core team,” at least in relation to the Big Tech giants, had noticed the meme being talked about more and more.
But independent analyzes do not substantiate the claim. It seems that much of the interest arose only after the FDA drew attention. The day before the agency’s pronouncement, the TikTok app logged just five searches on the subject, BuzzFeed News found in an analysis of TikTok data. That count rose to 7,000 the week after the agency’s statement. Google Trends, which measures changes in the number of searches, shows a similar pattern: Interest peaked in the search engine the week after the agency’s announcement.
Califf also claimed that the participants suffered “injuries” “directly” due to the social media trend. Now, he said, “the number of injuries has gone down,” though he couldn’t say if agency intervention was the cause.
Once again, his claims have unclear foundations. It’s unclear what actual harm the NyQuil chicken craze did, if any. Poison control centers don’t keep that data, said Maggie Maloney, a spokeswoman for the US Poison Centers. And, after multiple requests, agency spokespersons refused to provide FDA data reflecting increased social media traffic or injuries stemming from the meme.
By countering misinformation, the FDA also risks appearing overbearing. In September 2021, the agency tweeted about alleged myths and misinformation about mammograms. Among the myths? Which are painful. Instead, the agency explained that “everyone’s pain threshold is different” and that breast cancer screening is more often described as “temporary discomfort.”
Statements like these “erode trust,” said Lisa Fitzpatrick, an infectious disease physician and currently CEO of Grapevine Health, a start-up trying to improve health literacy in underserved communities. Fitzpatrick previously served as an official with the District of Columbia’s Medicaid program and with the CDC.
“Who are you to judge what is painful?” she asked, rhetorically. It is difficult to qualify subjective impressions as misinformation.
Califf recognized the point. Talking to 340 million Americans is hard. With mammograms, the average patient may not have a painful experience, but many do. “I think conveying that kind of nuance and public communication is in its early stages.”
There is also increasing scrutiny over the agency’s role with regard to food and nutrition. After freelance journalist Helena Bottemiller Evich wrote an article in which she criticized the agency for relying on voluntary reporting standards for baby formula, California tweeted to correct a “bit of misinformation,” saying the agency had no such authority.
A communications specialist from the agency made a similar intervention with New York University professor Marion Nestle, referring to a “troubling pattern of misinformation in articles that is then amplified.” The agency again sought to rebut claims that the agency had erred in not requesting the required report.
“As I see it, the ‘worrying pattern’ here is the FDA’s responses to advocates like myself who want to support this agency’s role in making sure that food companies in general, and infant formula companies in particular, don’t produce unsafe foods,” Nestlé replied. Despite the agency’s protests to Evich and Nestlé, the agency had recently requested such authority.
Efforts to respond to or regulate misinformation are becoming a political issue.
In July, a federal judge issued a broad, if temporary, injunction at the urging of Republican attorneys general, several right-wing political groups and Robert F. Kennedy Jr.’s Children’s Health Defense, a prominent vaccine advocate, barring federal health officials from contacting social media groups to correct information. A large part of the ruling detailed the efforts of a CDC official to push back on alleged misinformation on social media.
Later, an appeals court issued its own temporary ruling, this time countering the original sweeping order but underscoring the scope of the government’s pushback against misinformation. Califf has always downplayed the government’s ability to solve the problem. “One hundred percent of the experts agree, the government cannot solve this. We have too much mistrust in fundamental institutions, ”he said last June.
It’s a notable change from his previous tenure at the helm of the agency during the Obama administration. “I would describe the Obama years as gentle, intellectual and a lot of fun,” he has said. Now, however, Califf is preparing for more misinformation. “It’s something I think we have to deal with,” he told KFF Health News.